[SarkisPioute]

Have you changed your diet any?
Should try and move over to a 50+% raw food diet, take multivitemin/mineral pills and increase your Vitemin C intake to tens of thousand % over the daily recommened value.

Give your body the support it needs to fight off your diesease instead of taking toxins that fight one thing, but then just cause many other problems.

Yes Dr. Reddog

[XqrkN4a0]

There's some personal thread around so I thought I'd vent a bit.

Basically I somehow got crohn's disease in about April time almost 2 years ago, and I'm still not fixed. The medication's I've tried either didn't work or they made me more ill. One did actually work for about 6 months but then stopped. I've just started what might be the final treatment, but it hasn't started to work yet. I don't even know if it will, and I also don't know if there's anything else to try. I might need some kind surgery. It's not a great situation to be in when your 25. Going to work is hard. Going out anywhere is very tricky and not really worth it. Totally sucks tbh. The realisation my life might be seriously crippled from now on is quite a serious one.

I know this isn't the most exciting thread ever, but I just want to share my pain lol, and the internet seem's a good place.

[avodeinst]

Yeah,sometimes life sucks for various reasons to various degrees,I suggest finding a hobby that allows you to comfortably, and in a semi-controlled way, to distance yourself from sobriety.

[uchetrip]

Didn't Inept once write about his experiences with Crohn's? Maybe he will have some advice that can help.

[Anckzxik]

Well I hope things work out and if the treatment does not work then you will have the least painful/best experience one could have with the disease.
I had colitis once and I wouldnt wish that kind of pain and diarrhea on ANYONE and from what I understand its worse with Crohns. Things will workout, hope it does sooner than later.

[XqrkN4a0]

I think it's just nice to have someone who can understand (maybe because they've been through it). Work and friends will never really understand properly. They think I'm either antisocial or lazy.

[TOOGUEITEME]

I am sorry to hear that Kyros, it can be disheartening news to receive and even more so to go through. I wish there was some kind words I could throw out to try and encourage you but I don't want to sound cliché. At the end of it all it is times like these you really have to value what is good in your life because without them you are only left with the ****.

My sister was recently diagnosed with Celiacs disease and she has had to change her whole entire diet and eating habits because of it. It has been a tremendous pain in the ass for her but she said "Gotta stay positive, other wise I'll be depressed and have celiacs. Can't cure it with depression."

Find what makes you happy or feel good and put more emphasis into it and more of it in your life. They say smiles and laughter are the best medicine and I'm a strong believer of that.

Hang in there.

[XqrkN4a0]

Diet is one of the annoying things. There's no real evidence a certain diet of avoiding certain foods really helps. It's a real pain trying to work out if I'm better without certain foods, especially as my condition will go up and down anyway.

[Fksxneng]

One of my ex-wife's friends has Crohn's disease and about the only thing that has helped to relieve her pain is Cannabis.

Now I'm not really condoning its general use and I know its Illegal, and I'm probably going to get an infraction for even mentioning it on FM, But she swears by it and its the only thing that relieves her suffering and I'm a big advocate of its use for people who have diseases or illnesses that other legal drugs can't help to take the pain away.

I've no idea if a derivative of cannabis is available in tablet form from your doctor, but it might be an avenue you can pursue.

[XqrkN4a0]

Steroids are a good way of relieving pain as well. But not very good in the long term which is a shame really.

[KuznehikVasaN]

There's nothing you did to "suddenly [get] Crohn's" so don't feel too down. I've had Crohn's for over a decade and up until Remicade no treatments worked for me either. Like you said, some even made me worse. I've lived through the absolute worst of it (while attending university no less): I've done the steroids weight yo-yo, I've tried every diet in the world (to no effect), I've **** myself, I've been in the hospital, I've had more colonoscopies than 60 year old prostate patients, etc. Nevertheless, I absolutely never thought of myself as crippled and neither should you... Although you may become very familiar with toilet locations for every place that you go.

With Remicade, it's now highly managed and I am able to manage my weight and do all the things I normally used to prior to suffering any symptoms with only occasional, very minor flares.

You're living in a pretty good time to be stuck with Crohn's, honestly. There's no cure but the treatments are light years ahead of where they were 10 years ago.

[RedImmik]

Welcome to the club

[NvrNoNowX]

There's nothing you did to "suddenly [get] Crohn's" so don't feel too down. I've had Crohn's for over a decade and up until Remicade no treatments worked for me either. Like you said, some even made me worse. I've lived through the absolute worst of it (while attending university no less): I've done the steroids weight yo-yo, I've tried every diet in the world (to no effect), I've **** myself, I've been in the hospital, I've had more colonoscopies than 60 year old prostate patients, etc. Nevertheless, I absolutely never thought of myself as crippled and neither should you... Although you may become very familiar with toilet locations for every place that you go.

With Remicade, it's now highly managed and I am able to manage my weight and do all the things I normally used to prior to suffering any symptoms with only occasional, very minor flares.

You're living in a pretty good time to be stuck with Crohn's, honestly. There's no cure but the treatments are light years ahead of where they were 10 years ago.

Jan Vilcek is my hero and role model. Really nice guy too. Would never know how much he's worth by talking to him.

http://en.wikipedia.org/wiki/J%C3%A1n_Vil%C4%8Dek

Sorry to hear about both of your experiences. It's a nasty disease but luckily there are some excellent treatments available these days.

[Ehlgamxf]

What exactly does it do?

I've got a friend with it but I don't know what it does to you. It gives you diarrhea and cramps?

[vicgirl]

Jan Vilcek is my hero and role model. Really nice guy too. Would never know how much he's worth by talking to him.

http://en.wikipedia.org/wiki/J%C3%A1n_Vil%C4%8Dek

Sorry to hear about both of your experiences. It's a nasty disease but luckily there are some excellent treatments available these days.

Dude, lol. As someone who prides himself as a knowledgeable person and doctor, you have nothing else to say than "yeah it sucks but good thing there's stuff out there to help" and namedrop???

Or did Inept really sum everything you would have said and more?

Anyway, that aside...I don't have any real information about but know a good friend that suffers from Crohn's. He got hospitalized couple of times for surgery over the past two years (had to remove parts of his intestines!) but it looks like he's got it under control now - he uses some sort of self-injected medication. Is that how Remicade is administered?

[KuznehikVasaN]

Crohn's can cause ulcers and swelling throughout the intestinal tract, right through from the mouth to the anus, although in all but the most extreme cases it's concentrated on the colon, large intestine and towards the end of the small intestine.

Symptoms most typically include very serious diarrhea often including blood and pus, fistules and fissures around the anus, serious bloating and cramping, swelling and weakness at the joints and other symptoms. Suffice it to say that it really gets in the way of living. There is no cure and most typical treatments are either ineffective or can only be used in limited ways due to side effects - I speak of steroids here.

I attend a specialized GI research clinic every 6 weeks for my Remicade infusion and I see all sorts of people there who have been through absolute hell, ended up on Remicade and have had their lives virtually transformed. TNF-alpha blockers are absolutely amazing. It seems like most doctors in BC go through the "regular" treatments to see if they do anything and then apply to the government for Remicade authorization, except in severe cases when they go straight to Remicade. Either that or some other TNF-alpha blocker like Humira, Simponi or Enbrel.

It's magic, really. The drugs are extremely expensive, but it's hard to put a price on being able to live a normal life.

I was still suffering away when I worked at Nokia where people sort of knew I went to the bathroom a lot but never really asked questions. After a 6-week course of Prednisone, where I went up to 210lb, I started losing weight extremely rapidly and I was down at 140lb in just a few months. One person asked me if I had AIDS. I had never really thought it was that bad or even paid a great deal of attention. It was just my life.

Long story short, Kyros, it sounds like you've been there and I wonder whether this new treatment you're mentioning might be a TNF-alpha blocker. If so, put on a happy face. You're young and you live in an era where there are drugs that really work. The only downside is that you're going to get a lot less reading done...

[wgX44EEn]

I know a girl who gets Remicade shots every few months, and it's been a life saver. Good thing you are in the UK, cause this stuff is disgustingly expensive unless you have great health insurance.

[johnstylet]

I think it's just nice to have someone who can understand (maybe because they've been through it). Work and friends will never really understand properly. They think I'm either antisocial or lazy.

I don't understand Crohn's but I suffer from periodic bouts of IBS brought on by stress. People at work just think you're making it up when you say you feel dizzy, or they think you've been out drinking the night before.

[XqrkN4a0]

It is a TNF-alpha blocker. I've only been on it 5 weeks, so i'm not sure if it should be working yet. It's called Humira, which is Adalimumab. I think Remicade is Infliximab, and also similar. The good thing about Humira is that I self inject it into my leg every two weeks, and thats it. It's maybe a bit cheaper than Remicade (I think more ike £10,000 a year as opposed to £15,000), which would explain why I've started this one first. The other pain in the ass was that before starting this drug, they need to check you out for any infections that could get worse if you immune system is essentially crippled. They found I had a slight trace of dorment TB, which deleyed the whole thing about 6 months. What a pain that was. No idea how I got dorment TB, but there you go. The doctor said about 1/3 of the world have it. I said yeah, but thats like everyone in Africa and no one else, so why me

[XqrkN4a0]

I don't understand Crohn's but I suffer from periodic bouts of IBS brought on by stress. People at work just think you're making it up when you say you feel dizzy, or they think you've been out drinking the night before.

I have a mate who's kind of got that. Nervous stomach it's called, or something like that. People do think your full of ****, but it's genuine. A heck of a lot of people with crohn's think it was triggered by stress. I'm not so sure, but the most stressful thing that i've ever been through was a couple of months before I got crohn's so maybe.